There are no miracle cures!

It’s been a little while since my last post as I continue to struggle into my fifth month of TSW. The physical torment and mental torture continues to take its toll on me, although I feel I am staying strong for the most part thanks to understanding and supportive family and friends as well as words of encouragement from fellow sufferers on social media support groups. But damn, it sure is hard.

The topic I want to write about today (at 2am in the morning on another sleepless night) is something just about every one of us going through TSW has dreamed about — finding that miracle cure. Okay, maybe not even a cure, but that one thing that can alleviate the symptoms or speed up recovery enough for us to get back to normality much sooner than otherwise. It could be anything: supplements, changes in lifestyle or diet, exercises and meditation, phototherapy, creams, ointments, herbal remedies, essential oils — you name it, I will try it. And I feel like I have probably tried them all.

I’m going to do future posts on the various supplements, creams and other products I have tried over these past five months and their various perceived efficacies, but the reality is — THERE ARE NO MIRACLE CURES FOR TSW. While I don’t believe time is the ONLY thing that will heal your body — there are scientific ways that should speed up the process — the sad truth is that no matter what we do, we will inevitably have to suffer and suffer for a very long time.

I think it’s important for everyone going through TSW to acknowledge that right from the outset, so there are no unrealistic expectations and devastating disappointment when goals and targets are not met. I, like many others who have embarked on this journey, thought at the beginning that I would be one of the few to make a full recovery in six months or less. I felt I was relatively healthy otherwise and in a positive frame of mind, and I believed I had secret weapons such as potent traditional Chinese medicine remedies, incredible supplements, special creams/sprays, and diet plans. I thought combining all of these ingredients would equate to a super speedy recovery.

Of course, I could not have been more wrong.

I can’t believe when I started TSW on Nov. 15 last year that I thought I might be largely recovered by late February this year, and when that didn’t happen to be still optimistic enough to think it might happen by April. Instead, I have barely left the house for nearly six weeks. Right now, I’m just hoping to be functional enough to leave the house by mid-July. I really want to celebrate my wife’s birthday because she deserves it so much after what I’ve put her through these last few months. That, and because I want to be in tip-top condition when I watch my most anticipated movie of the year, War for the Planet of the Apes!

Having said all that, I don’t want this post to discourage anybody in trying to find some kind of remedy that works for them, something they feel can lessen their suffering or speed up the healing process. As Andy Dufresne once said, “Hope is a good thing, maybe the best of things, and no good thing ever dies.” It’s important to not lose hope during TSW (I’ve seen some people in utter despair after go through this for more than four years, wondering if it will ever end). That is why I don’t understand some people who actively discourage others in trying to find alternative therapies, shooting down any suggestions and insisting that it’s simply a waste of money.

To be fair, I have spent literally thousands of dollars in TSW trying to find something — anything — that even remotely feels like it works. Apart from TCM and acupuncture expenses, new supplement shipments just about every week, and new creams, ointments, sprays, etc from the pharmacy on a regular basis, I’ve also forked out money on a mini trampoline and a red light unit. And the thing is, I don’t know if any of these expenditures have even helped because there’s no alternate reality for me to compare it against. I can’t only trust that I’m doing the right thing and not making things worse or slowing down my recovery. All I can do is conduct a lot of research and discuss it with others who have tried similar approaches.

Now, even IF none of these things have worked, I don’t regret spending that money for one second. Because if just one thing among all the things I have tried has alleviated a bit of my pain and suffering or sped up my recovery by just a little, it would have all been worth it. That’s why I’m still looking around online on most days for any recommendations from TSW warriors, reading articles and studies on the effects of various supplements and therapies. Finances permitting, the agony of TSW is too overwhelming for us to not at least TRY to make the ordeal easier.

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Does diet really matter during TSW?

That is a loaded question. I’ve read a lot about both sides of the fervent debate and these are my thoughts.

On the one hand, there are those who swear by the advice of TSW guru Dr. Michael Rapaport, who claims that diet and nutrition have absolutely no bearing on the withdrawal process. TSA/RSS is an iatrogenic condition caused by steroids and the only thing that helps is cessation of use — everything else is superfluous. In the FAQ section of Dr. Rapaport’s website, he explicitly states in response to why cutting out gluten seems to help during TSW: “The process of withdrawal takes months to years and there are so many ups and downs spontaneously that no credit can be given to diets, bath additives, anxiety reduction etc. etc. Any perceived benefit is purely coincidental and not causal.”

On the other hand, there are those who take a more holistic approach to healing from TSA/RSS and insist Dr. Rapaport is wrong — diet does play a crucial role in both speeding up the recovery process and alleviating TSW symptoms. Proponents of this stance point to a couple of things to back up their argument.

1. Diet/nutrition can address Th1/Th2 imbalance

I don’t profess to be an expert on this topic, but essentially, the human body has both T-Helper 1 (Th1) and T-Helper 2 (Th2) immune cells. Th1 is more immune stimulatory while Th2 is more immune deficient, and they need to be in balance for our bodies to be fully healthy. Most people tilt toward one side or the other, and if it tilts too far our immune systems develop issues such as eczema (Th2 dominant) or psoriasis (Th1 dominant).

When our bodies go through TSW, the Th2 dominance we likely already have gets tilted even further to the extreme, which is why we get so much inflammation. Some believe recovering from TSW ultimately means rebalancing the Th1/Th2 imbalance, which means increasing Th1 and/or reducing Th2 in the body. This is where diet and nutrition come in, as there are many foods and supplements that naturally shift the body toward Th1 or Th2. Check out this Self Hacked post for more information.

2. Diet/nutrition can inhibit the release of nitric oxide

Again, no expert on this field, but from what I have read, nitric oxide is the main mediator of TSW symptoms in that its release causes much of the blood vessel dilation and skin damage we see during the process. While generally a good thing for healthy bodies, excess nitric oxide release during TSW has been blamed for everything from the red skin to the body odor to the oozing/weeping. It’s nasty stuff, meaning during the TSW process we should avoid foods that boost nitric oxide (here are some examples) and possibly take supplements to inhibit nitric oxide, such as vitamin B12 (only in Hydroxocobalamin form).

I must say that, after reading arguments from both sides, I tend to side with the “diet matters” crowd. There are plenty of people who insist that diet and nutrition makes zero difference and claim as proof their own recovery without watching what they consume. Others say that TSW is such a harrowing and nightmarish process that we should hold on to any pleasures we have in life, and this means being able to eat whatever we want. But we really can’t know for sure whether their recovery would have been faster or if their symptoms would have been less severe had they followed a stricter diet or taken certain supplements. However, I have personally been on a pretty restrictive diet myself (no gluten, dairy, eggs; low sugar and grains in first few months) and I know I keep second-guessing myself, wondering if I am depriving myself of things I could eat for nothing.

That said, my diet restrictions are not random, as I did have allergy tests done which revealed that I am severely allergic to dairy and eggs and moderately allergic to gluten — at least during this current TSW phase (I had consumed these products without any issues all my life). I just think it is better safe than sorry, as TSW is already so difficult that if I could just make my suffering a little less unbearable or speed up the process then it would be worth a try. Importantly, I am also determined to rid myself of eczema once TSW runs its course, and making these dietary changes to rebalance my body could very well inch my body closer to that goal.

I feel Dr. Rapaport might be right in that TSW simply needs to run its course, and that, all other things being equal, diet might make no difference one way or the other. But the thing is, we are not all made equal, and some of us have pre-existing conditions that caused us to reach for the steroid creams in the first place, such as eczema. And many of us know (or are convinced) that diet and maintaining a healthy gut plays a huge role in keeping eczema at bay. I therefore don’t see the risk in improving your diet during TSW or why people can be so against it. After all, it can only help.

In the end, I say go with whatever makes you most comfortable. Like most things in TSW, I believe there is probably a trade off of some kind. In the case of diet and nutrition, it could very well be speed of recovery/severity of symptoms vs being able to eat what you want.

Is it really TSA/RSS or could it be something else?

As someone who reads posts from the Facebook TSW support forums every day, I see a lot of people who are treating their condition as TSA/RSS and undergo withdrawal accordingly, believing that their condition will eventually be resolved by ceasing topical steroid use as claimed by Dr Rapaport.

However, I also wonder how many of these cases are genuine TSA/RSS, and how many are actually just eczema cases with other underlying causes that have not been addressed. This is particularly the case for parents who believe their children have TSA/RSS despite a very short period of usage and/or low potency. It just seems odd to me that children can develop an addiction to topical steroids in say a month or two of normal use or using just a handful of times in a number of years, and yet there are parents out there who force their children to go cold turkey without first looking into other possible causes or solutions.

This highlights one of the biggest problems with TSA/RSS — the vast majority of cases are self-diagnosed. Unless you’ve forked out the money to see one of the few specialists in the world who even acknowledge TSA/RSS exists — like say Dr Rapaport, or Dr Fukuya (when he was practicing) or Dr Sato in Japan — chances are you are merely “guessing” that you have it.

Of course, ceasing steroid use can never be a bad thing, but it’s also dangerous to assume that simply stopping steroid use will solve all your problems. After all, TSW is a harrowing process, a living hell I would not wish upon my worst enemy. And it can take months, if not years. It should be the last thing a child should be subjected to. If you’re going to take the long leap into the abyss, you better be damn sure you’ve actually got it. But how?

A good starting point is the ITSAN checklist which sets out the most common symptoms of the TSA/RSS. For convenience sake, I have reproduced it below.

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The problem is, a lot of these symptoms could be just eczema-related or due to other conditions the person has not identified. There are, however, some symptoms that appear to be unique to TSA/RSS, and these would be: Rashes gradually spreading to new areas over time, progressively requiring higher dosage steroids to achieve the same efficacy, flaking of the skin, redness all over the body including areas where steroids were never applied.

For me personally, I’ve had most of the symptoms described above thus far, with the exception of enlarged lymph nodes. Even so, and despite usage that spanned decades, it took me a while before I was convinced that I had TSA/RSS. As I noted in My Story, there came a point when I suddenly realised that my previous treatments for eczema stopped working or almost stopped working. It was so obvious, and it came with serious flaking, which I never had before. It got to a point where I had to either take oral steroids or use topical steroids daily in order to keep the rashes at bay, and as soon as I tapered I knew a flare would be forthcoming.

My only doubt was that I didn’t think I had the “burning” sensation many RSS sufferers were talking about. My skin did get crazy inflamed and felt very hot to the touch, but I wouldn’t go as far as to say it burned. And when I started TSW anyway and suffered beyond anything I could have ever imagined, my wife started worrying that perhaps I had some other factors either causing or exacerbating my symptoms. A TCM doctor took one look at my yellowish/greyish tongue and concluded that I had a very inflamed gut. For a while, I was convinced I also have/had leaky gut and/or candida. The more you read up on these things, the more you become a hypochondriac.

Instead of continuing to pour time into reading more conditions I might have had, some of which was contradictory anyway, or spending thousands more on supplements I probably did not need, I finally decided to do the smart thing and get myself checked out with a series of blood and urine tests. The doctors at hospitals or clinics might not agree with or even know about TSA/RSS, but they can’t refuse to run tests for you.

I’m so glad I did, because it ended up removing a lot of lingering doubts. It wasn’t cheap, but it was worth every penny. I first got a blood test done at a hospital, which was not very comprehensive, but showed that my cortisol levels, at least in the morning, were normal. All other health indicators were within normal range, except for my bad cholesterol, which was slightly on the high end but nothing serious. My eosinophil levels, which indicate an allergic disposition, was also higher than normal, but this was expected given my condition.

I then got a series of more comprehensive tests done through a naturopath, who didn’t really know much about TSA/RSS but was willing to hear me out and keep an open mind. For starters, the tests showed that I didn’t have candida but I had small intestinal bacterial overgrowth (SIBO), which is arguably even more annoying. But there are different approaches to tackling candida and SIBO, and I never would have known this would the tests.

In fact, SIBO could be the very reason why my eczema spiralled out of control in the first place and needed so much steroid use to contain it. You see, about 4 years ago I started taking an antihistamine called Xyzal, and it pretty much liberated me from eczema. I didn’t itch and I didn’t get any rashes for a very long time, which gave me a false sense of security. As a result, I ate very poorly, with lots of sugar, dairy, gluten and fried foods. I also took a lot of whey protein as I was working out a lot, never realising that all of these things, along with the antihistamine itself, was doing serious damage to my gut lining. Later on, a period of serious stress followed by an illness that kept me on antibiotics for a whole month might have been what pushed me over the edge.

Anyway, I am now taking a herbal supplement to kill the SIBO, and I’m also taking probiotics (of course) to put the good bacteria back in. The other thing the tests revealed was that I was lacking in vitamin B6, which came as a surprise as I took a multivitamin loaded with B vitamins, including B6. The naturopath prescribed me an “activated” B6 supplement, and I guess we’ll see how my next test turns out. Importantly, the tests also showed that I didn’t have any thyroid problems as I had suspected (due to family history), and that my liver and kidney functions were normal.

On top of that, my allergy tests revealed that there were no foods I was immediately allergic to (IgE allergy), but I did have some foods I needed to avoid because of IgG allergies, which builds up in your system over time. Not surprisingly, these were wheat (moderate), dairy (severe) and eggs (severe), foods I had consumed practically daily all my life. Interestingly, in the IgG test I had done four years ago, I was severely allergic to wheat but only moderately allergic to dairy. It’s possible that, because I had effectively cut out wheat from the start of my TSW journey, the wheat allergy was already starting to fade. Either way, I’m going to stay away from wheat and dairy until at least October — the recommendation is 6 months for severe allergies, 3 months for moderate allergies, and then sporadic intake thereafter. In other words, it does not mean I would have to stay away from some of my favourite foods (pizza, dumplings, chocolate milk) for the rest of my life. I just need to be careful and consume in moderation after my body is clear of the allergens built up in my body over time.

Diet and TSW is a touchy subject, one I hope to do a post on shortly. For now, all I will say is that I am hoping I will eventually get my old life back for the most part and be able to live on a non-restrictive diet. Several people with medical knowledge, including my current naturopath, have all said to me that you can basically eat whatever you want as long as your gut is healthy. So that is what I am working toward — a healthy gut — which I am praying will also take care of my eczema problem once TSW has run its course.

I’ve gotten off track a little, so allow me to steer the topic back to the question of being sure that you really have TSA/RSS. Can you imagine going through TSW symptoms for months or years and then discovering that you could have rectified the situation through other means? What if you could have spared your child the agony of TSW? That’s why I recommend getting as many tests done as possible to be as sure as you can that you don’t have any other underlying conditions either mimicking TSW symptoms or exacerbating them. You might not find anything in the end, but at least you’ll have peace of mind.